Advice pls... Dad diagnosed.

[CatLover2020]

My Dad has been diagnosed with Left Ventricular Systolic dysfunction of <40% output. His symptoms still aren't under control, covid delayed tests etc. They are now on top of things with that and he's due to start a new trial drug in a week or so. It's been 6 months since diagnosis and some days he's so unwell others not too bad, although always breathless after activity and tired. I suppose I'm hopeful to hear if this type of diagnosis can be controlled better? Is it early days as far as a drug combinations? My mum was crying today, convinced he's going to die soon, I'm so worried for them both. Any advice appreciated. Thanks x

[Brandibell]

Hi, sympathy to Dad and hugs to Mum. It does come as a shock when it is a diagnosis for your heart. I am 46 lone parent to two boys .I have LVSD and 35% and now possibly a rare heart condition. (Waiting on a test).*18 months on and I am still here, so do remain positive.

Your Dad will probably have a few more tests yet and a check up when needed. They tend to give a concoction of Tablets at first and then see how they work and offer a follow up.

[Lezzers]

Hi catlover

It is a shock to hear the words 'heart failure' (HF) but in reality it simply means your dad's heart needs a bit of help with the Pumping. With meds, healthy diet & exercise as agreed with his medical team and of course the meds, which may take a time to get right, there's no reason to think he can't live a normal life with some adjustments.

An EF of 40 isnt too bad, you're only considered to have HF when your EF is below 45. My husband was diagnosed in 2012 with an EF of 35 which went to 30 in 2016. He had an echo earlier this year which showed his EF had improved to 55 & his HF had gone from moderate/severe to now mild.

The Pumping Marvellous patient led HF charity is the best place for accurate and up to date info, please don't google as there is so much untrue rubbish out there. Pumping marvellous also have a Facebook support group which is a fabulous group for help, advice & support, I'd highly recommend that you & your family & of course your dad join the group for support.

If there's anything you'd like to ask about HF, ask away and I'll help if I'm able to.

[Lezzers]

It's hard to say exactly what, but we've followed the recommended low fat diet for years, he keeps himself fit and he takes his meds as prescribed. About a year ago they gradually increased his candesartan, which has probably helped considerably but as he hadn't had an echo between 2016 & 2020 I can't say for definite.

He's always had potassium issues, it's currently out of range & rising again but whether this is due to the candesartan (he can be very meds intolerant) or whether this is connected to his recent medical diagnosis we don't know yet.

However, he really has an amazing attitude, he absolutely refuses to dwell on any of his medical conditions & I think that also makes a difference.

[daveofpensby in reply to Lezzers]

Hi Lezzers I am convinced it’s your attitude I’ve got H F with a EF of 34% had ICD fitted but I don’t let it rule my life I walk 4 or 5 mile a day every day do all sorts of physical things like laying paving flags in garden today, yes tired at the end of the day but I am 70 year old, with the aid of medication and attitude of mind I’ll fight this as much as possible I’m not ready to roll over yet ( wife goes mad )

[2stents in reply to daveofpensby]

Aw you remind me of how my dad use to be

Even built me a conservatory while in heart failure, my mum brothers and myself used to go mad at him. Bless him he never stopped

[Lezzers in reply to daveofpensby]

You sound very much like my husband, refuses to let it take over his life & I'm pretty sure he totally forgets he's got a heart condition at times.

I'm more like your wife, always telling him off. He's had a heart condition for 23 years, I've tried wrapping him in cotton wool but he won't let me! 🙄

Good to hear you're doing so well & yes I think attitude plays a big part in it.

[daveofpensby in reply to Lezzers]

Hi lezzers thanks

I too have been living with a heart condition for 24 years since having my first heart attack at age 44

[pen5377]

My husband was diagnosed with LVSD ejection fraction under 30. It took some months to improve. First started on Ramipril, but had side effects. Then switched to Candesartan. At half maximum dose of Candesartan his ef improved to 35 (6 months after diagnosis) and a few months later it was 43-46. Exercise at first was gentle but regular walking, then got on to cardiac rehab programme. It takes time, but his progress has been consistent. Important to keep to medicine regime, to exercise, but not over do it and rest when tired.

[GracieOS]

Hi, I was diagnosed with heart failure nearly two years ago now. My EF at the time was low to mid 30s. I was told my heart failure was severe. I was only 55 at the time. I made the big mistake on googling it and ended up convinced I was going to die soon. Nothing could of been further from the truth. Two years on my EF is at 58%, within the normal range and I'm fit and active. I'm currently untaking a virtual walking challenge to walk the coastal footpath of Wales, 870 miles, in a year. I started on the 13th July and have walked 160 miles already. I also practice yoga and cycle (I bought an ebike, best thing ever) I feel well.

This was achieved by drug intervention, which took a while to get right for me, regular moderate exercise and a reasonable (not perfect) diet. Things can and do get better, just follow the medical advice, they know what they are doing. Very best wishes to you, your dad and mum.

[IrisCarter in reply to GracieOS]

This is great to read as I am also 55 newly diagnosed with an EF of 33%, new mechanical mitral valve and an ICD which was implanted 18 years ago for a sudden death syndrome.

[colwynn66]

Hi I've had lvsd at 20% for 3 years now. Iam getting on with life there will be thing that he will find a bit hard to do. Iam on a drug call entresto that works very well for me. Hope this helps you abit Colin.

[CatLover2020 in reply to colwynn66]

Hi there, thanks for reply, he's due to start this drug on 7th Sept... Fingers crossed for him. Glad it helps you too x

[SuzanneW3331]

My Dad (85) diagnosed with HF January this year with LVSD and EF of 35%. He was very poorly and like you we thought we were going to lose him. Tried different medications and nothing seemed to work until he was prescribed Entresto 2 months ago. This was a game changer for Dad who is now back cycling every day and enjoying life. Don’t lose hope x

[CatLover2020 in reply to SuzanneW3331]

He's due to start this v soon x x

[FeetheBookworm]

I was diagnosed 4 yrs ago with HF. Had an EF of 17% and fluid everywhere. Lost a stone in fluid in hospital and carried on losing for first month (on 2 fluid tablets a day). I could barely walk and was absolutely exhausted all the time. 6 months later had a pacemaker put in, got infection on the incision that went on for about 3 months.

3 yrs on my EF is 43%, I’m considered cured and discharged from HF clinic to GP care. I see a nurse annually for bloods. I was going to the gym regularly which stopped during lockdown and I need to get back!

I do still have days when I get very tired and I just have to pace myself.

Has your father been allocated a BHF HF nurse? Mine was invaluable, always positive and there when I was in a panic in the early stages.

It is hard at the beginning, bewildering and exhausting. But things will get better!

Any questions we are here to help.

Fiona